The president and CEO of AIDS United takes LGBT leadership to task for not prioritizing HIV/AIDS.

Michael Kaplan

Where the hell is our community?

I've been reading And the Band Played On, and for some reason, it feels more like a commentary on today's news than a historical account of the discovery of AIDS. As I read about the emerging infections on both coasts, along with Kaposi's sarcoma and pneumonia leading to gay-related immune deficiency (GRID) -- eventually named acquired immune deficiency syndrome (AIDS) -- the pages reveal a disturbing struggle to get anyone to care about it, even the gay community, which was being hit so horribly hard.

Chapter 13, April 2, 1982: "[O]f the 300 cases in United States, 242 were gay or bisexual men, 30 were heterosexual men, 10 were heterosexual women, and 18 were men of unknown sexual orientation." Today, 31 years later, the Centers for Disease Control and Prevention (CDC) estimates that more than 1.1 million people are living with HIV and AIDS in the United States, and the vast majority are still gay men.

This month I was invited to participate in a meeting of more than a dozen federal legislators and a dozen leaders from the lesbian, gay, bisexual, transgender and queer (LGBTQ) community. The meeting was to talk about the LGBTQ community's political priorities.

I discovered that I was fully out of sync with my fellow national LGBTQ leaders. The conversation went something like this: Defense of Marriage Act (DOMA), Employment Non-Discrimination Act (ENDA), DOMA, DOMA, ENDA, immigration, DOMA, ENDA. Had I not been there, I truly believe that HIV would have never been mentioned at all.

Don't get me wrong: I believe that gay marriage, employment nondiscrimination and reforming immigration laws as they pertain to same-sex couples are worthy battles and should be priorities. But I'm heartbroken that HIV/AIDS has fallen off the gay radar. In fact, it hasn't mrely fallen off; it's been politely removed! It feels like it has been set aside because it requires conversations about more difficult topics, like sex, drugs and poverty, unlike the less-complicated message of love that is the cornerstone of the marriage talking points. We've de-sexed "gay" to win political wars about marriage and, as a result, abandoned confronting a sexually transmitted infection that is devastating our community.

In 2011, with an estimated 49,273 new HIV infections in the U.S., some 31,890 were among men who have sex with men, according to the CDC. In some major cities, CDC-funded research estimates that as many as 20 percent of all men who have sex with men are now HIV-positive. And if you break that down to race, I've heard it said that the chances of a young black man who has sex with men becoming HIV-positive before he is 50 is close to 1 in 2. Gay men are the only community that continues to see an increase in new infections.

Where the hell is our community?

Chapter 15, 1982: "[Marcus] Conant ... had the knowhow and resources to conquer this disease ... We could win the fight, but nobody is willing to make the effort or even acknowledge there is a battle out there to be won." To be sure, years later, the battle became clear, and resources were mobilized. As infections spread to the more "valued" among us, like hemophiliacs, "innocent" children and heterosexuals, America took note. By 1990 the Ryan White Act was passed, and systems of care began to grow. But it wasn't until the last three years that the statement "we can win the fight" became true, at least in my opinion. Today, thanks to research funded by the National Institutes of Health (NIH), we know that early treatment can reduce sexual transmission by 96 percent. We know that if we truly scaled up testing, told every member of our community, "You need to know your status, and you need to be part of the solution," and helped those who are infected get into care, we could probably half the infections in no time.

But instead, our community has decided that we can live with this, I think. We can all take pills when it gets bad and manage as we need. Folks are living longer, treatments work, and, yes, I can still do my job, have sex and be loved. But let us not forget that the lifetime treatment cost is estimated to be over $350,000 per infection. Every day we are diverting billions from our own community to take care of that virus that we dare not stop. Let us not forget that 15,000 folks still die every year after living with an HIV-positive diagnosis. Each year 9,000 men who have sex with men who previously lived with HIV are now dead. We're losing more gay and bisexual men with HIV each year across the U.S than the average gay pride festival often dreams of pulling in.

Our community has decided to live with this, not talk about it, but live with it. Heads held high as we fight for gay marriage, employment nondiscrimination and so much more, but please, just please don't talk about sex, let alone AIDS! The thing is that we don't have to live with HIV. I mean some of us do -- I do -- but as a community, we can end this. We can all know our HIV status tomorrow, we can get into treatment, and we can be the ones who write the last chapter of this epidemic, the ones who finally stop the band from playing on and on.

Of course we gay people deserve the same rights like marriage and employment nondiscrimination! Heck, I want that. But let's not kid ourselves: Some in our community will pick that monogamous relationship, but others will not. And the vast majority will not go "straight" to marriage, do not pass dating, but instead will become part of that growing pool of young gay men in major cities, that pool in which one in five is now infected. We can live with this, but we don't have to. We can change it when our community as a whole says, "Not knowing your status is unacceptable," and, "Getting linked to care is as important as flying the rainbow flag."

We can end this epidemic, but until our community talks about it, makes it a priority, says, "HIV is at the top of our agenda," I fear we will only see more generations of young gay men becoming infected. I fear that the band will indeed be playing on and on and on.

(Note: The POZ team reviews all comments before they are posted. Please do not include either ":" or "@" in your comment. The opinions expressed by people providing comments are theirs alone. They do not necessarily reflect the opinions of Smart + Strong, which is not responsible for the accuracy of any of the information supplied by people providing comments.)

harleymc, , 2013-06-23 04:21:35
"Community" was always overhyped by the assimilationists as a way of derailing the push for liberation, revolution and even activist based reforms. "Community" is a reactionary construct and always was.

Eddie, Columbus, 2013-06-17 11:46:40
There is a big disconnect between the newer generation LGBT leadership and newer PLWHA generation in general. In each group, they missed the 80's. In fact some of us have had the virus longer than they have been on this earth and yet they have the kahunas to speak on our behalf. To be blunt, many suck as they have no clue other than how to collect a paycheck. AIDS Inc. at its finest.This goes for the national HIV groups as well..

Craig LaRue, Fort Smith, AR, 2013-06-02 18:08:47
Men over 40 still want that porn movie moment when their erection springs free of their clothing like porn actor. We feel like we deserve it, and we feel like it is normal and if we can't produce that display, we become bottoms just to escape humiliation. So I think we should give them all a big hug and a T-shirt that says, "I am not my dick". instead of continuing to call them stupid for not wearing condoms. Men can not enjoy condoms without getting past false ideas about the penis from porn.

david, UK, 2013-06-02 05:27:06
As a straight man I do notice how accepting and understanding gay people are when it comes to HIV. POZ.com forums are a reflection of this.
When I thought I was infected I found poz.com and I turned to a gay couple in my friendship circle who were fantastic. They counseled me for three months through to my final negative diagnosis.
Don't be so hard on your own community, because as an outsider looking in it's a truly commendable community.

Rick, Lansing, MI, 2013-05-27 10:58:11
Brad, no one wants to talk about "disclosure" to you because you reinforce the idiotic notion that wearing a scarlet letter is going to stop a disease primarily spread by people who don't know their status. No one wants to deal with stigma as prevention Fowler, especially when they just want to get their rocks off.

alittlecuir, Toronto, 2013-05-25 10:47:07
Our community isn't getting the air-time because there's just too much of our s*&t that don't nobody really want to talk about, and they're conversations we need to have.
Equal Marriage gained ground when they dropped discrimination from the conversation, focussing instead on Love. We played our Equality card to access care. Now at the Responsibility portion of the game, we're tasked to explain barebacking, drugs, and promiscuity.
And "Impacts of Oppression" don't sell.

Bruce EqualityAmerica Lang, Bloomington, IL, 2013-05-25 06:53:19
Wow! You said so well what I have been sensing since the early days myself. HIV is the proverbial "elephant in the living room" within the LGBT communities. Everyone knows it's there but no one openly acknowledges it directly any more. I have always tried to pay homage to HIV for the role it played in the advance of LGBT civil right. For example, teaching that the results of self-esteem building from equal civil rights can significantly reduce the risk of HIV transmission.

Brad Fowler, Canton, 2013-05-21 02:37:42
Reading this is funny, because today's LGBT community seems to be absent and lost in a heterosexual mind state and because of this we don't connect unless we're connecting in cyberspace for sex. I cannot connect with one HIV positive male in Michigan that wants to discuss disclosure andor take part in anything that deals with HIV WHY
Because, Americans' have seemingly forced most gay men into a box of fear and those who speak out are harassed convicted and killed I'm the gay who sued Bible pub.

Brad, Washington, DC, 2013-05-16 15:51:37
Well said. Unfortunately, we have lots of leaders pointing the finger at others. Meanwhile, there are some of us out there, but AIDS, Inc. tends to support the status quo. At a recent PEPFAR 10th anniversary commemoration in DC, homophobia reeked (Sen. Lindsey Graham spoke) even though one of the speakers was a former ACT UP person.

PozInMaine, Maine, 2013-05-06 07:08:53
This is my community. The idea of a GLBT community is a farce. I am only included when my vote is needed for something like marriage equality. Our ASO's don't even include us in our own concerns. I stopped supporting the so-called gay community long ago. You are looking in the wrong place Mr.Kaplan. We are your community.

joey, greensboro, 2013-05-05 15:07:52
I have tried numerous times to volunteer at the local aids task force; it seems more of a social club for popular people. Gay youth are released into the wild as prey, tossed aside "not loved" or any sex edu. "FUN" is the way of the world. Instead of being a shelter for the gay storms bar/club/performers do anything for the next big $$$. The only promoting is drinking more, empty sex and not to care. You may see one small box of condoms! I like to mention HIV at least one time in a conversatio

Greg Noone, Patchogue, NY, 2013-05-03 13:09:25
Excellent job, Michael! You have put into words and expressed exactly how I feel. I could not have written them better. I, too, share in part of the blame as our HIV/AIDS CBO is not funded nor does anyone that I know of fund activism any more. When we were ACT UP, we got away with stuff that someone with a mortgage can no longer do...otherwise, I am with you 100% and I am sure that our Long Island GLBT political allies will if we ask...I hope..

angelray, Bethlehem Pa., 2013-05-02 23:30:55
You think it's been forgotten in NYC, here in Bethlehem, Pa. it's like it existed. I'm a new Yorker forced to live in this place because I couldn't find housing in NYC.Anyway keep writing and I'll keep reading. thanx

Frederick Wright, Coachella Valley, 2013-05-02 16:36:24
Elizabeth ADAP was set up under an Emergency to keep people of the Medical rolls and off disability. The affordable Care Act addresses these short falls in HIV care by allowing many to buy healthcare with no preexisting and also instruct the state to allow HIV people on Medicaid, where you once must have AIDS to be on Medicaid. Now this is a theory and in California a fact. Each state must address their care systems therefore I suggest the HIVers united with all illness. ADAP will be phase out

mark, Brooklyn, 2013-05-02 15:50:20
Thank you for you're article on this subject and hope for more in the future. I agree with you 100%. I stopped some years ago socializing in the communities because of the very same things you written about and found myself alone. But did return to school and graduated college and have a new profession - healthcare. Today, some don't see it as their problem and others are "oh well take a pill."